MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Thursday, 13 September 2012

You might have thought that the implication of something I wrote yesterday about the Paralympic legacy was a bit alarmist. I said, "Nevertheless it is to be hoped that the high-achievers will have dispelled the myth once and for all that disability renders you less of a person, with less dignity and worthy of less respect.This recognition has implications for both ends of life."Today the news outlets contain a story which suggests that this is already a real matter of life and death. The case is reported of a 51-year old man with Down's Syndrome who had a DNR ("Do Not Resuscitate") notice attached to his hospital notes without his, his family's or his carers' knowledge or consent. It was only discovered when he returned in good health to his care home. The reasons given for not resuscitating the man were: "Down's syndrome, unable to swallow (Peg [percutaneous endoscopic gastrostomy] fed), bed bound, learning difficulties". For learning difficulties and Down's Syndrome to be given as reasons not to save someone's life is chilling.Obviously we don't know Margate hospital's side of the story, as they won't comment on a sub judice case. But on the face of it their treatment of AWA, the patient, and his next of kin was shameful. Sadly it's not an isolated case. The comment of Mark Goldring, chief executive of learning disability charity Mencap, is worth quoting: "We are very disappointed to hear about this case, but unfortunately, we believe that DNR orders are frequently being placed on patients with a learning disability without the knowledge or agreement of families. This is against the law. "All too often, decisions made by health professionals are based on discriminatory and incorrect assumptions about a patient's quality of life."People with a learning disability enjoy meaningful lives like anyone else. Yet... prejudice, ignorance and indifference, as well as failure to abide by disability discrimination laws, still feature in the treatment of many patients with a learning disability."Health professionals need to understand their legal duties when treating people with a learning disability, and be held to account when they fail to do so."Source: BBC Health News

Wednesday, 12 September 2012

There’s
been lots of talk and print about the 2012 “legacy” – from the problems of
picking a sports’ personality of 2012 and what would happen to the Olympic park
in East London to the lessons for the economy and the implications for the
Prime Minister’s position.He
bizarrely, I noticed, used the success of both Games as an argument against
Scottish independence (“you showed us what we really are – one United Kingdom, one flag, one
celebration…”).However that’s not
the real legacy issue.It’s not
even whether the tubes will run on time; it’s not whether there’ll be a baby-boom
in nine months’ time, or whether children will keep asking their parents to
organise their own Olympic Games.

For
me it’s much more profound and systemic than those things.

We
applied for both Olympic and Paralympic events.As it turned out, I am very glad I didn’t get tickets for
the Olympics, but “only” for the Paralympics.Being disabled myself I thought it would be
interesting.In fact it was
intensely moving.We went to Eton
Dorney to see the rowing heats, and the following day we made it to Greenwich
to watch the Equestrian event.After that I recorded the television coverage so that I could fast
forward through all those annoying and too frequent adverts interrupting
well-informed analysis from a number of unfamiliar commentators.Meantime I reflected on what might be
the much touted legacy of the Games, besides medals, golden post-boxes and
postage stamps, and a couple of smart sports venues.

Since
we are such a media-controlled society, let’s start there.It was striking how much demand there
was for every venue,
and how blanket coverage of every event could be sustained.Even women’s football which started
slowly had gained momentum and full stadiums by the end, proving it is an
exciting competitive spectacle.And then there were a myriad of rarely seen events, from archery to
weight-lifting, athletics to swimming, cycling to team sports, both able-bodied
and disabled.To pick out any
would be invidious, but who could forget the thrill of BMX racing or the
dodgem-like aggression of wheelchair rugby?Or fail to be excited by stars like Sarah Storey and David
Weir?There was an astonishing
variety of events and stars who captured the public imagination.What an opportunity – for reasonably
priced television programming, which of course is a two-way street, providing
accessible entertainment and generating
further interest in the sports.Why need it wait for the infrequent mega-events? And while I’m on the subject, how refreshing it was to have fresh faces
on our screens unpretentiously commenting on events they understood from the
inside!

There’s
a danger, it seems to me, of investing in élitism at the expense of “the
rest”.Many of the medal winners
would include Lottery funding in their thanks.It clearly contributed to their success, but lest
politicians congratulate themselves that this success proves how well we
provide for the disabled in general they should consider what happens to the
disabled who aren’t elite athletes.They should know that the disabled community lives in fear of their fate
when their Disability Living Allowance is soon replaced with the new Personal
Independence Payment, and when their benefits are reassessed.They should know that the disabled who
are not out achieving remarkable things in sports arenas are not therefore
lay-abouts and scroungers.Nevertheless it is to be hoped that the high-achievers will have dispelled
the myth once and for all that disability renders you less of a person, with
less dignity and worthy of less respect.

This
recognition has implications for both ends of life.Isn’t it time to reassess our attitude to foetuses who have
some disability or neurological condition?At the moment we presume that termination is the desirable
option.Now we know beyond doubt
that in abortion we are ending a life of unforeseen potential.And, at the other end, we should also
know that broken bodies of any age are not merely fit for the scrapheap; they
have the same spark of humanity as the most perfect specimens.They are worth fighting for because
even the least has value.

Another
legacy I trust will remain from the Paralympics is the spirit of sport, by
which I mean the respect and empathy towards each other shown by the
competitors.Anyone who saw it
will long remember Ellie Simmonds embracing her victorious American “rival”,
Victoria Arlen, across the lane ropes after she’d come second in the 100m freestyle.Conversely one couldn’t fail to be
moved by Jochen Wollmert’s immediate comforting of the defeated and distraught
Will Bayley after their table tennis final, in remarkable spontaneous
sympathy.Spontaneity and honesty
was also a mark of the athletes’ interviews, whether “gutted” with disappointment
or elated by achievement.We could
do with more of that – not only in sports but also in other areas of public
life: less ear-tickling, more
heart-felt saying it as it is.Less political calculation, more paralympian honesty.The Paralympics could leave us a better society. Will we accept their legacy, or leave it unclaimed?

Monday, 10 September 2012

One of my family has observed my recent blogging black-out. One of my excuses was tiredness following last Friday and Saturday when we went to two of the Paralympic venues. So I thought a quick photo journal would be a jolly way to update this. Reflections might follow given inspiration. I have to say the opening ceremony of the Paralympics was a real disappointment after the class act of the Olympic equivalent, but the actual paralympic competitions I thought were more impressive than the able-bodied ones, and certainly more moving.

Anyway, our first visit was to Eton Dorney where the rowing events took place. It was a bright cool day.

The young toffs' boathouse

Two spectators in Grandstand

We'd prebooked parking, which meant we were ushered to very near the entrance and security checks. We didn't actually have to take our shoes off, as in Twenty Twelve, but Jane and Rachel went through the electronic screening and I was frisked by a polite young soldier. All the time we we surrounded by hordes of volunteers offering advice and hoping we'd enjoy ourselves - which we did.

A minibus whisked us halfway down the course, where we paid our first visit to the abundant and super-duper loos. I don't where the 10,000 of them are going after the Games, but the disabled ones certainly should not be scrapped. They were something else!

Nick Beighton and Sam Scowen

The coxed fours

We ensconced ourselves in Grandstand 2, opposite the big screen, and where you could see both the start and the finish, though it's hard to judge who's in the lead because of the angle across the lake. We saw three sets of heats, in all of which Brits did well, the mixed double sculls, the men's single sculls and the coxed mixed fours - in which unusually the cox lies at the front of the boat. The GB 'four' (5 including Lily the cox)

went on to win the gold in the final. Sadly for Tom Aggar, and Sam Scowen and Nick Beighton, they came fourth in their finals - which is a hard place to end up, especially when the media raise people's expectations about you. Tom Aggar, the favourite in the Arms and Shoulders Only sculls, just said he was gutted. (I must say it struck me there was a refreshing blunt honesty about the Paralympians in the post-event interviews.)

The gold-medal four

The one downer about the arrangements was the volume of loudspeakers bang in front of our seats, which fell quiet only at points in the races - otherwise they had excessively loud music or some cheerful charlie keeping up an entertaining (I suppose) chatter. As you can see, there were thousands in the crowd, merrily marshalled by helpers in the purple and orange uniforms (you can see one girl perched on her umpire's chair behind the departing mob). On the way out we were regaled by a band of the Marines, and a chap up another umpire's chair shouting, "God bless you!" As we drove home, we felt He had done so.

Lee Pearson on Gentleman

Jo Formosa on Worldwide PB

On the Saturday after a more leisurely start we set off for South East London. Had we relied on Sean the satnav we might have made it with more time to spare. However I knew better. Thus it was that we reached the south end of the equestrian arena in the nick of time to see the 1b Dressage tests begin - at the old naval college in Greenwich. I have to say I found watching those very disabled riders from all over the world controlling tons of horse with amazing accuracy very moving. I think it was that afternoon which really engaged my attention with the Paralympics.

Mutual support on the medal rostrum

Many of the riders had been paralysed after riding accidents. Some had cerebral palsy and other neurological conditions. Lee Pearson, riding for Great Britain, has the rare arthrogryposis but humour with it. He'd already won a gold medal with the GB team; this time he won the silver to add to his hoard of medals from previous games. The winner was Jo Formosa from Australia who persuaded her horse, Worldwide PB, to produce a beautiful performance, with instructions shouted from the sidelines above the roar of passing jets.

Lee Pearson acknowledging the fans

What was most moving was the medal ceremony. The riders' skill is such that you're hardly aware of how severe their disabilities are, but once they're off their horses you see the full extent. Also obvious is their obvious mutual respect and affection. That's a characteristic of the Paralympics which really struck me much more than in the able-bodied competition - the generosity to each other after competing, whether in victory or defeat. It seemed that all the Paralympians had empathy for each others' efforts, pain, achievements or disappointments. They, more than anyone, knew what it cost. Which, by the way, was what made the disabled commentators and analysts on TV so refreshing. What a change from those tired old chauvinistic regulars!

The final capitulation - Team GB flags
on my wheelchair!

I'm glad we weren't successful in applying for the "real" Olympics. Impressive and exciting though those were, in my view they were outshone by the Paralympics, the parallel Olympics. Oh yes, I almost forgot to mention the weather! I'd have thought a passing word of thanks to the Almighty would be in order, as certainly LOCOG wasn't responsible for arranging that. I was sorry that although the Olympic opening ceremony had reference to God, the final closing ceremony reverted to New Age paganism with its invocations of the spirits of the seasons. Really! Why on earth London (of all places!) 2012 should have been so blessed with so much sunshine in the midst of the wettest summer on record (etc etc), I have no idea. It seems Jesus was right, "Your Father who is in heaven... makes his sun rise on the evil and the good, and sends rain on the just and the unjust."